Living with Epilepsy


The majority of people with epilepsy can do the same things as people without the disorder and have successful and productive lives.  In most cases it does not affect job choice or performance.

 

General advice about medicines for epilepsy

 

  • Do not suddenly stop giving any of these medicines to your child, as they may have a seizure. If you are worried, talk to your doctor but carry on giving the medicine to your child as usual.
  • If your child seems to have more seizures than usual, contact your doctor or your epilepsy nurse.
  • If your doctor decides to stop a particular medicine, they will discuss this with you. You will usually reduce the dose bit by bit.

 

Do not change the dose of any drug without discussing with your doctor first.

 

  • It is best that your child always has the same brand of each medicine, as there may be differences between brands. Keep a record of which medicines your child has. If you have any questions or concerns, speak with your child’s doctor or pharmacist.
  • Try to give medicines at about the same times every day, to help you remember.
  • Only give the medicine(s) to your child. Never give them to anyone else, even if their condition appears to be the same, as this could do harm.
  • Make sure that you always have enough medicine. Buy a new prescription at least 1 week before you will run out.
  • Make sure that the medicine you have at home has not reached the ‘best before’ or ‘use by’ date on the packaging.

 

Preventing seizures

Some people with epilepsy find that certain triggers make a seizure more likely. These are not the cause of epilepsy but may trigger a seizure on some occasions.

Possible triggers may include:

  • Stress or anxiety.
  • Heavy drinking.
  • Street drugs.
  • Some medicines such as antidepressants, antipsychotic medication.
  • Lack of sleep, or tiredness.
  • Irregular meals, which cause a low blood sugar level.
  • Flickering lights such as from strobe lighting.
  • Periods (menstruation).
  • Illnesses, which cause a high temperature (fever) such as flu or other infections.

It may be worth keeping a seizure diary. This may show a pattern, which may identify a possible avoidable trigger.

Keeping a healthy lifestyle, a well-balanced diet, regular meals and not getting over-tired may help you to feel better and may reduce the chance of seizures occurring.

 

Education

The child with epilepsy may need different support services during his/her educational years such as remediation therapy, shadow teachers and some concessions during exams. These concessions may vary depending on the Central or State Boards such and the National Institute for Open Schooling (NIOS). Procedures for applying and concessions that are available vary among different Boards. Most Boards require a disability certificate from a Government Doctor and information about the child’s requirements from the School Principal. The type of concessions granted will depend on the needs of the child and the policy of the Board.

 

Educational benefits for students with disability under the NIOS scheme.

Children with epilepsy who may have issues in going to school for reasons of distance, terrain etc. should be encouraged to study under National Institute of Open Schooling.

NIOS has its Regional Centres and the Study Centres across the country. The contact details of its Headquarter are as under:

National Institute of Open Schooling

A-24/25, Institutional Area, Sector – 62, NOIDA Distt. GautamBudhNagar, UttarPradesh-201309. Toll Free: 1800-180-9393

Web Site: www.nos.org
Chairman: Tel: 0120-2403173, 0120-4089802 Fax: 0120-4089813

Email: cm@nios.ac.in
Secretary: Tel: 0120-2402889, 0120-4089809 Fax: 0120-2403172

Email: secretary@nios.ac.in

 

Career & Job Opportunities

In most government jobs, the fitness of a candidate who declares in writing or is detected to be suffering from any chronic disease (including epilepsy) is decided as per the work profile of the specified post.

In general the suitability for job and medical fitness can vary from job to job and between different organizations. Those people with epilepsy seeking employment are advised to consult the terms and conditions for eligibility and medical fitness for the job before they apply for the job.

Income Tax: Deductions of expenses on medical treatment of specified ailments can be claimed under Section 80DDB.

 

Insurance

One should be careful and look out for some clauses in the document, that you must read the document carefully before subscribing to any medi-claim policy.

Some insurance companies have started to include epilepsy in the Health Insurance plan: IndiaFirst Mediclaim Plan.

 

Travel

You should make sure you have sufficient medication with you for your travels. Long journeys and jet lag may make you tired and more prone to a seizure. This should not stop you travelling. However, it may be best that someone on the trip be aware of your situation.

Some antimalarial tablets interfere with anti-epilepsy medication.Your doctor or travel clinic should be able to advise you about this.

 

Sports & Leisure Activities

INDIVIDUALS WITH EPILEPSY SHOULD NOT UNDERTAKE SCUBA DIVING – due to change in breathing and air pressure can trigger seizure.

In general, if a person is free from seizures he/she and is on antiepileptic drugs, most of the sports and leisure activities can be undertaken. But if seizures are not well controlled then activities, which may endanger their life or that of others due to an accident resulting from a seizure, should be avoided.

 

Driving

According to current Indian Law, irrespective of medical examination and recommendations, a person with epilepsy (even one episode) cannot drive.

 

Be prepared

Most people with epilepsy have their seizures well controlled by medication. However, it is best to be prepared in case a seizure does occur. Below are some suggestions:

 

Tell people

It may be sensible to tell people about your type of epilepsy. It may be possible to give friends, relatives, work colleagues, school – teachers, etc, some idea of what will happen if you do have a seizure. They may wish to learn about the recovery position if you have the type of epilepsy that causes unconsciousness.

If you have the type of epilepsy where your behaviour may appear to change (complex focal seizures – used to be called complex partial seizures), other people may be more sympathetic and helpful if they understand and are warned about what to expect.

Consider wearing a medical emergency identification bracelet or similar. These devices will contain an emergency number to contact.

 

Safety

The aim is to anticipate and avoid potential serious injury if you have a seizure.

Below are some suggestions, but common sense will prevail in your own personal situation:

  • Heat. Do not use open fires. Think about the design of the kitchen. A microwave oven is much safer than a conventional oven, hotplate or kettle. Always turn pan – handles towards the back of the cooker. Take the plate to the pan, not a hot pan to the plate.
  • Water. Showers are safer than baths. If you do not live alone, tell someone if you are having a bath, turn off taps before you get in, and leave the door unlocked. Keep bath water shallow. Do not bathe a baby alone. When you swim, do it with someone else and not far away from dry ground.
  • Heights. Make sure there are sufficient guards or rails in any high situation. Consider a rail at the top of your stairs. It is best not to climb ladders.
  • Electricity. Use electrical tools with power breakers. Fit modern circuit breaker fuses.
  • Sharp furniture. Safety corners are available to cover sharp edges. Perhaps consider soft furnishings around the home as much as possible.
  • Glass. Consider fitting safety glass to any glass in doors or to low windows.

 

Do not let having epilepsy stop you going out and leading a full and active life. Obviously, not all risks can be eliminated. However, it is best to use common sense and to be safety aware.

 

Attitudes

Coming to terms with the diagnosis of epilepsy may be difficult. This may be because of wrong or old ideas about epilepsy. Some parents become over-protective towards children with epilepsy. This is understandable but may need to be resisted for the child’s best interests.

Like a lot of conditions, it is sometimes the attitude towards the condition that may be more disabling than the condition itself. If you find that you are over-anxious or become depressed because of epilepsy, it may be advisable to have counseling. You should ask your doctor for advice about this.

Dr C P Ravi Kumar
Consultant Paediatric Neurologist
MRCPCH, CCT (Paediatrics)
Fellow in Paediatric Neurology
Fellow in Paediatric Epilepsy

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